MrbLOB9000

Should be in bed but wanted to do a quick update first.  I have to be up tomorrow at like 6:15am to get to the hospital to get surgery to put the new catheter put in my vain to do the blood stem cell harvest.  The fun’s not over after that though, it’ll be used that day (if I pass whatever metric in my blood test).  I’ll be hooked up to a machine that (apparently) looks like a dialysis machine for 5 or 6 hours.  They’ll do that for up to 5 days until they get enough (out patient, so I’ll go home after and then go back the next morning if need be).  The only thing I’m worried about really isn’t the surgery, more so it’s once I’m hooked up to the machine, I can’t be detached and it’s to big to leave the room… That means if I have to go to the bathroom they have to bring me a bottle thing to pee in, no problem.  The problem comes if I have to shit… I prefer the home court advantage of shitting at home, let alone basically shitting in a bucket int he middle of the room.

Met with both the high dose chemo doctor and the radiology oncologist and got a little bit more info but already knew most of it.  Talking to the radiology oncologist, he went over my history with us and we learned my original… fuck what’s it called? like rating on how fucked I was, can’t remember the official term… anyway, I was apparently a 3b.  He said I did have smaller spots past my diaphragm is why it was that.  I was thinking and it could have been that Dr. Dragon said back then that I didn’t have bulky disease past my diaphragm, not that I didn’t have any past my diaphragm.  Key difference but ya, from how bulky it was around my neck and apparently chest (more on that in a minute) I’d have been much worse off than I was probably.  Also, he didn’t say what my fucked rating was and we didn’t ask.  Don’t think I wanted to know what it was at the time anyway.  The Radiology oncologist also said I had a 2.5″ to 3″ mass in my chest back then too.  I remember at the time that I felt like I couldn’t take a deep breath and I had trouble with the pulmonary function test (breathing test) back then too.  Didn’t know about that either.  I knew it was bad already, I don’t think it would have helped anything to have an exact quantified measure of how fucked I was with all the ins and outs and parameters of it.  Anyway, found that pretty interesting.

Don’t know if I said it previously, think I did but fuck it, about a week from monday, maybe a little more I start radiation.  It’s twice a day for two weeks then once a day for like 5 days or something.  The hospital I’ve been going to for regular chemo and that Dr. Dragon is at is in Highland park, like 15-20 mins away.  They don’t have the right equipment for either the kind of radiation that I need or my body type or both and so I have to go to another hospital that is part of the same company or whatever that’s in Skokie, which is 45mins away.  Can’t be rad having it so far away but we’ll see how much that sucks.  The side effects of radiation are apparently fatigue, soar throat (’cause the throat gets hit with some radiation because of where it is next to a bunch of lymph nodes) and ‘light nausea’ or however he said it from the stomach getting hit with some of the radiation from it being next or near to some lymph nodes and them obviously not being able to do pin point accurate radiation.  So we’ll see how much that sucks and how much any of those things end up effecting me.

As for the high dose chemo, found out that second week after I’ll probably have soar throat from it (they’ve always been asking if I have and worried about mouth soars from chemo so makes sense) and so I’ll be reduced to ‘soft food’ like pudding and stuff.  And that I’ll sluff off all my taste buds and so food won’t taste good for like a month as they grow back.  That’s going to blow, I get a lot of joy out of delicious food.  But as I told my boss, If given the choice, I’d rather live than taste cheese burgers for a month.  🙂  His reply was something along the lines of, “Well, if this is the worse case scenario, you seem to be doing better than that on all the other ones, so that may be the case this time.”  Here’s to hoping.

This entry was posted on Monday, March 1st, 2010 at 12:24 am and is filed under Hodgkin's lymphoma. You can follow any responses to this entry through the RSS 2.0 feed. You can skip to the end and leave a response. Pinging is currently not allowed.